Dis*ease Unease!

For most of my life, I’ve been “dis” at ease with my Dystonia, so if the shoe fits…

There are a number of nasty words in the English language but perhaps none worse than “dis*ease,” “dis*ability” and “handicap.” They make us feel less than whole human beings and fling us outside some perceived realm of “normalcy,” promoting discomfort with what I call lack of perfection. They beg the questions: Is there something wrong with ME? I move, therefore I am? I spent years chasing idealized images until stopping short at the conclusion my flawed realities will have to do perfectly fine. Besides, I prefer to see life as a philosophical and psychological journey rather than a crooked walk down the street.

We all share in creating dis*ease unease: personal discomfort with outward signs of weakness, inquisitive (I didn’t say mean-spirited) stares turning humans into objects, well-intentioned questions, unsolicited assistance invading silently staked personal dignity. No one wants to envision taking on the physical and emotional struggles of illness but for many, ill-health is transacted as an inescapable aspect of the business of life.

When dis*ease turns on a dime, remarkable is the proliferation of the healthy, blissfully unaware of their fragile status. People fail to appreciate the feats of nature in the properly functioning body until the control system goes awry, focusing on beauty bumps that mar the surface. We worship flawlessness, youth, good looks, virility, physical strength, aiming for the maddeningly elusive perfect 10. When I confess my desire for someone’s easy lope, they laughingly note how I hardly covet their stride while I stand mystified. Perhaps they imagine a pigeon toe, wobbly knee, or less than shapely leg, rather insignificant compared with the navigational mischief practiced by my naughty neurotransmitters.

Our true beauty resides beneath the skin in how we open our hearts to life and share our souls with others. Dis*ease can distort the pretty picture that’s merely gift wrapping, requiring us to appropriate Superman’s x-ray vision and judge one another for the qualities we carry, catapulting dis*ease into ease.

30 responses to “Dis*ease Unease!”

Hey Carrie, I happen to know you have an awesome blog – Run Carrie Run! – listed on my sidebar with a link! I say the more the merrier when it comes to Dystonia sites but would you really consider maintaining two? Whew, just the thought tires me out! Keep on running for all of us. -Pam-

Thanks Susan. This may be one of the most important posts I’ve written so far, going to the heart of my message. Our society can definitely do better when it comes to acceptance, starting with accepting ourselves! -Pam-

Shannan, The admiration is mutual. You blog with poise, bravery and candor, inviting us into your world. Stand proud. When I was your age, I was light years away from opening up about my Dystonia let alone maintaining my own site. Thrilled to see you participating in Dystonia BloggerMania! -Pamela-

Thank you for wit and light language on such a heavy subject.
I tried to muse myself when 50 hit me before I hit 50–but now that I’ve settled in to 60 I stare at my recliner raised toes and its not amusing:( Pedi’s used to be for the painting of my pretty toes and the much needed removal of calluses that I earned walking miles in the Mall with my job as a Rep. No calluses now…my feet do not walk much. My knees are the boss and they answer to RAD. My toes, well its hard to accept but they bare bending to the onslaught of Rheumatoid malaise and I now go for pedis just for the chair and foot massage. But please MUSE on–we need to rise above and the power of words to elevate are immeasurable!!! Blessings!!

This muse sums up my constant dilemma when I am talking to a friend with an autistic son. She prefers the word sickness to disease but I feel that neither one is correct. He is not sick, he is autistic, he is challenged in his day to day activities,but challenged isn’t right either. Maybe we need another Shakespeare to appear and write a play using an invented word for it.

Murray, With the wealth of words comprising the English language, it really is amazing how we face such limited and unattractive choices when it comes to characterizing those of us living with illness. Perhaps we should assume the role of wordsmith and invent a few ourselves! -Pamela-

Hi Donald, Don’t I wish the whole world read my words (lol)…but I’ll “settle” for my little corner including wonderful followers like you! How to even address the abundance of lessons people would do well to learn? We can only open our hearts and try. Have a great weekend. -Pam-

Another fantastic and thought-provoking read Pam! And one in which we can all relate – language, and especially language regarding health and illness can as you said take us out of ‘normalcy’, and thus making us feel abnormal. When I did my psychology degree, the clinical psychology module was labelled ‘abnormal psychology’ which I always thought was wrong and stigmatising towards those with mental illnesses – they are not abnormal of course, there brains just happen to be wired differently, or their brain chemicals are all out of whack! Apart from that, they are just like everyone else; like all those with disabilities are just like everyone else, except with certain difficulties and life challenges.

Thank you for sharing and putting the spotlight on the language and its negative effects for certain groups in society.

Rhiann, You perfectly capture the intent of my article. We all need be mindful of our words, which can have quite the powerful effect. While those of us with health conditions live with points of difference, doesn’t everyone? Our language, thoughts and attitudes are quite impactful and should be used to include rather than exclude. -Pam-

Hey Carrie, I believe fate brings people together! Checked out your blog (even commented) and I love your point of view. Can’t say I know much about Dysautonomia other than how it rhymes with Dystonia but I do know the two are entirely different conditions. I look forward to learning more about yours and getting to know you. -Pamela-

Angela, Always lovely to hear from you. Judging a book by it’s cover is certainly a limiting way to approach life and human relationships. We have so many facets as individuals, no reason to brand us by a condition we carry. Hope you’re enjoying the holiday weekend. -Pamela-

Thanks for sharing . All of us with Dystonia wonder how we came to be with this dis ease. But we have to see the beauty God has inside of us, no matter how imperfect we are. God loves us in spite of our imperfections. You my dear are truly blessed. Love your daily chronicles.

Valerie, Thank you for the lovely comment. This post is particularly meaningful to me and you’ve hit the nail on the head. For so many years, I worried about how I appeared to the world when it’s what’s inside that really counts. And truly, who is free from imperfection. Take care and enjoy the rest of your weekend. -Pamela-

Mafechristie, Thank you and lovely to hear from you. This is a topic that invokes strong feelings and surfaces in so many of my posts. Truly, one of my main purposes is to combat misperceptions of disability and its place in our lives. Hope you are enjoying your weekend. -Pamela-

Highlights from the Bronx Zoo Walk on Oct. 4, 2015

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Email: ps@dystoniamuse.com

What seems like a lifelong experience with Dystonia began with a "mis-step" when I was 8-1/2. Dystonia may have staged a coup over certain body parts but my heart and soul remain firmly my own. I'm a friend, daughter, sister, creative mind, honorary auntie, fan of the quantum mechanical, hopefully one-day spouse, now also health activist.